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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Feels like theres no help out there!!!!

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Feels like theres no help out there!!!!

Post  laura224 on Tue Dec 20, 2011 1:40 pm

I am a 28 year old female, who has been suffering for the past two years, with endless visits to my doctor, gynaecologist, GU clinic ect. my partner ended up having an affair and leaving me because of this, it also affects my social and work life.
Sex has always been painful for me and i would be in pain for days after it and also bleed, I then got a yellow/green discharge and chronic stabbing/burning pains in my vaginal area, my partner had admitted to having an affair and thought he had given me an STD, so have had swabs done on at least 10 different occasions by different people, but they come back negative but sometimes says there are abnormal white cells.
I had a laperoscopy where mild endometriosis was found and lasered off and was told that this was only the cause for painful sex, not for my other pain and discharge, i then had a hysteroscopy where i was told my womb and vagina looked fine and they couldnt find a cause for the discharge!! i have had my bloods and urine tested which also come back clear, and also had my urethra looked at which was also normal.
My doctor told me i could be suffering from vulvodynia and prescribed me amitryptelene, which sometimes gives me some relief, however it doesnt last long!
It is really affecting my everyday life, sometimes the pain gets so bad i cant walk, i feel stressed and depressed and have not had much support offered to me, does anyone have similar symptoms? or can offer anything else to try???


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Re: Feels like theres no help out there!!!!

Post  stephsue on Sun Dec 25, 2011 5:46 pm

Hi Laura -
Sorry to hear you've had so many medical issues! That is so tough. Have you gotten a chance to see someone who specializes in vulvar or vulvovaginal disorders? That is a good starting off point for you. Unfortunately even many OBGYN's still aren't terrifically knowledgable about these things. Fortunately, there are many MANY other things you can try besides amiptryptiline, but seeing a good specialist would be the best way to determine which would make sense for you.

If the pain is all burning/stinging then it could be a skin issue (sometimes people even are treated by dermatologists, but again, not all may know that much about VV). For this people will try topical steroids, topical estrogen and/or testosterone cream if there is a hormone imbalance contributing to things - I also try to follow an anti-inflammatory diet (google Dr. Weil anti-inflammatory food pyramid for a good reference), and while I'm unsure how much it is helping the VV, it definitely improves my health overall!

You might also have some pelvic muscle issues, which I would imagine would be even more likely since you've had a few surgeries. Again, you would need someone knowledgeable to diagnose this and refer you to a PT, who might then help work out some of those muscles and do biofeedback to teach you to relax them. There are also other drugs that you could probably try if the amitryptiline is not doing much for you.

It can be hard to find a good specialist depending on what area of the country you are in - I have lived in Boston and NY and could recommend people there if you want to PM me, and I'm sure members of the forum from other areas could make recommendations too. You can also go talk to some doctors and see how much they know about vulvodynia/vulvar vestibulitis/pelvic floor dysfunction. If they are familiar with all of these things then that is a good starting off point and they may be able to help, or at least refer you to someone who knows about them! Hope that you are able to find some relief and a good clinician to help you!


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